My Journey Through Appendix Cancer and My Tips to Others
- 1 day ago
- 5 min read
By Tim Morgan
New Hampshire
What started as a suspected case of appendicitis on Halloween 2024 quickly spiraled into a confusing medical ordeal. When I went for surgery to have my appendix removed, there was a note in MyChart about a "possible malignancy" and removal of the right side of my colon which left me thunderstruck even though the surgeon indicated that it was probably nothing. A week later, I received the words that every patient dreads - "You have cancer."
The Search for Clarity: Navigating Second Opinions
The initial days following the diagnosis were confusing and incredibly stressful. My surgical post-op consultation was a lesson in worst-case scenarios, hot chemo, and a stage 4 diagnosis with treatment interventions. My thoughts were all over the place and all I could think about at that moment was “what the hell are you talking about? Cancer? Hot chemo?” As we were wrapping up, my surgeon told me to not be afraid of getting a second opinion - “nobody’s going to be offended if you talk to someone else.”
Seeking a different perspective, I went to Dana-Farber Cancer Institute in Boston. There, I learned from the oncologist the terrifying truth about the rarity of appendix cancer— there are only 4,000 cases in this world diagnosed a year. As hard as it was to hear that, I felt like a person and not someone with a medical issue. I decided to be treated at Dana-Farber.
My wife, Anne Marie, joined me for most of the early appointments. She’d sit next to me, notebook and pen in hand and take notes. I’d ask most of the questions, but occasionally Anne Marie would come up with her own questions. Having her by my side with her notebook really helped with staying informed and being prepared for topics that we needed clarity on and for every milestone.
The ERAS Protocol: Walking Toward Recovery
Through my own research into Mass General’s programs, I discovered the Enhanced Recovery After Surgery (ERAS) protocol which consisted of taking an active role in my own healing, staying active, and walking 10k–15k steps with my dog just a week post-op.
The "Crackle" and the Dark Days of Chemo
After the surgery, I was told my cancer was stage 3 with one lymph node involved, and they thought they could cure me with six months of chemo. This was good news, of course, but it was hardly a relief.
I managed to keep working, as hard as it was, through my chemo treatments. I dealt with fatigue, brain fog, and a cold sensitivity I dubbed “the crackle” because I’d feel a “numb” sensation in my hands and feet that I can only describe as crackling. For me, it wasn’t really numb. My sensations were deadened, but if I bumped my hand or foot against something, it hurt a lot. In the first half of chemo, I got relief from the nausea from ginger or peppermint tea, turning to the anti-nausea meds when it got bad. It worked well for me, I only vomited once, right before the last infusion.
The second half chemo got hard, dark and ugly. I went through two C. Diff infections. The first sent me into septic shock. The second was much worse, combined with E. Coli for a concurrent “double whammy.” I was hospitalized for 12 days, I was so severely dehydrated I lost about 40 pounds by the time I went home.
I went in for one of the infusions – I think it was the fifth infusion, about a week after the first infection–my oncologist wanted to give me the treatment, so she picked up the phone to give the notification that she was going to handle it but. I felt weak; not tired, it was a different fatigue like nothing I’d ever felt before. I asked her to hold on, I was still weak and didn’t think it was a good idea. She looked at me, nodded, put the phone down and said "Come back next week and we’ll see where things stand.”
Between the infections I wondered whether it was worth it, and I gave serious thought to stopping after the first infection. My wife was amazing, supportive as ever, but I never broached the subject with my oncologist. After the second infection, I again considered tapping out of chemo, but figured there were only two treatments left. When I went back to see my oncologist for the sixth infusion, she held it. I wound up doing seven infusions instead of eight.
Those last two treatments were the worst of the bunch, but I got through them. My advice is if you feel the slightest bit off, say something about it. Make sure your concerns are known, heard, and addressed.
The entire time I remember being told – by different people at different times – “you look great.” In hindsight, I realize our treatments can be so effective we don’t look like there’s anything wrong.
Finding Purpose in the Stillness
I’d heard about “chemo brain” and was worried about what it would do to me. I work as a web developer, so I also studied for a technical certification to keep my mind active. A lot of it made very little sense during chemo, but I did pass on my second attempt a couple months after it ended.
Throughout treatment I was drawn to things that gave me purpose. I practice a martial art called iaido, which is a solo art where we draw and then sheath a dull practice “katana” (a single edged sword), and perform a series of choreographed movements. We move from still awareness, to decisive action, then back to still awareness. It’s a meditative art and it calmed my nerves during treatment. My wife kept asking me how I could stay so calm with a cancer diagnosis; I feel a lot of it was because of iaido.
As a hobby I write movie scripts; I'd just started one when the diagnosis hit that I finished right before the surgery. I wrote two more during chemo. As I’m writing this, two of those scripts advanced in screenwriting contests.
Picking Myself Up
This may sound silly, but I felt like I needed to remember to keep myself motivated. I put sticky notes all over my monitor with messages to myself. The first one - which I still have - says “Live | Fight | Survive.” Some of the others were “Be The Third Monkey”, and “Strong Spirit | Strong Recovery.” When my sister was in the thick of her own cancer fight, she did something similar. I know, it sounds corny, but it helped me because I was terrified about losing parts of myself. It really didn’t take a lot to stay connected to those parts of me -10 minutes here, 15 minutes there - an hour or so on a good day. Those little bits add up, and they go a long way toward helping me remember I was still me.
Encouraging Words Based on Experiences
Looking back, my message to others facing these cancers would be:
Empower yourself by seeking a second opinion;
Leaning on a "scribe" to capture the details you might miss in the haze of a diagnosis;
Guard your identity by staying connected to the passions that make you you, ensuring cancer doesn't swallow your sense of self; and
Above all, honor the fine line between perseverance and peril by knowing when to fight and when to utilize the brave act of pausing to let your body heal.
The New Normal: "NED"
As I’m writing this, it’s been about 8 months since chemo ended. I’m slowly settling into this new normal. I’ve come a long way but I’m still improving. Today, I carry a powerful title that a survivor can hold - “No Evidence of Disease (NED).”.